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ELPA News

“HCC Voices” – the first global survey on people living with hepatocellular carcinoma (HCC)

Although HCC is the sixth most commonly-diagnosed cancer globally, and the second-leading cause of cancer deaths annually, there are very few organisations that focus on HCC patients. As a result, HCC patients may not be receiving adequate support and information about their condition.

Prof Panos Kanavos and Dr Jennifer Gill from the Medical Technology Research Group of the London School of Economics decided to develop the first global survey of people living with HCC to better understand how these patients cope with life, the challenges raised by different treatment options, including side effects, impact on quality of life (QoL), issues around treatment access and their feelings about their most-recently received treatment.

“HCC Voices” was supported by a global partnership of liver cancer groups and a number of liver cancer treatment units in major medical centres around the world.

Study results

Between November 2016 and April 2017 256 patients from over 13 countries completed the survey. The survey was conducted anonymously and most surveys (88%) were completed online. As far as we know, this is the large global survey that looks at the impact of HCC and its treatment from the patient view. The most important results:

Almost all patients, no matter where they live, will be confronted with significant fear and anxiety upon diagnosis of HCC. The five most common words patients used to describe their feeling were ‘fear’, ‘worry’, ‘scared’, ‘anxiety’ and ‘shock’, but words like ‘hope’ and ‘calm’ were also used by some patients.

HCC patients trust information they receive from their doctor, but most feel that they need more information from other sources in order to better understand their disease and how to treat it. Many found patient charities to be lacking.

Side effects related to current treatment options are negatively impacting on quality of life (QuoL). 63% suffered from fatigue, 60% had abdominal pain, 40% had reduced appetite, 38% had nausea and a similar number (37%) experienced weight loss. Skin disorders affected more than one out of four patients (28%) and almost one in five experienced hair loss (18%).

Among patients who were still working at the time of diagnosis, 60% were unable to continue working because of treatment side effects.

Treatment also had a negative impact on patients’ relationships with their family/carers (28%), their energy level (44%), their daily activities (37%), and their outlook for the future (34%).

The clinical outcome of different treatments could not be measured in this survey as the results were reported by the patients themselves, while they were still alive.

While all treatments were associated with side effects, systemic treatment with sorafenib had a larger negative impact on QoL than loco-regional treatments like TACE or SIRT.

Improved treatments are direly needed. At this time, patients with late-stage HCC face a difficult choice: no treatment at all means a shorter life-span; available treatments may prolong their lives for a few months but significantly worsen their life quality.

patients with HCC need more, and better treatment strategies to maintain their quality of life (QoL). Easy-to-understand information is needed by HCC patients at all stages of their disease, both at diagnosis, during treatment, and end-of-life care.